Bad Right Breast

I've Always Hated My Right Breast!

31 Days of Advice – Breast Cancer Awareness Month October 4, 2015

Filed under: cancer — Bad Right Breast @ 8:18 pm

Here’s my annual list of advice throughout Breast Cancer Awareness Month.  I’ll continue to update everyday and post.  Enjoy!

Day 31 – Well, this is it. (Although, if you’ve ever dealt with cancer, there is never an end. Not really.) Love yourself. Love your family. Love your friends. Be grateful for what you have. Trust your instincts. Be brave and forge ahead.

Day 30 – Four years ago I was in the midst of chemo, doing my best to keep our girls’ lives ‘normal’ and preparing for Halloween. I didn’t know that I was going to end up OK. I didn’t know what a toll it would take on my family, my friends, my body. I didn’t know that two years later Penelope would admit that it was a scary time. What I did know was that I had to do everything in my power to keep life as ‘normal’ as possible for me, as much as for them. Enjoy this time. You just don’t know if you’ll get it again. Have a safe Halloween!

Day 29 – 29 Days of Breast Cancer Awareness, although by now it seems all of the marketing and sponsorship dollars have been spent and the last days of the month are lost.  Seriously, when was the last time you saw the color pink (except maybe on the hands and fee of the NFL.  I mean, I love my football, but I friggin’ hate the color pink!) and thought to yourself, ‘Oh yeah, I need to schedule that mammogram!’  Or did a self-exam all on your own?  I’ll repeat as I stated on Day 1 – ONE IN EIGHT women is diagnosed with breast cancer EVERY DAY!  And they still don’t know why.  Ever since the Supreme Court ruled it unconstitutional for the one company in Utah to hold a patent on gene testing for cancer a mere two years ago, we’ve yet to see any other genetic testing come forth to tell us how this happens.  My genetic chart looked like a family tree with chicken pox with all of my cancer-ridden relatives, yet I’m an ABSOLUTE NEGATIVE.  I was literally told, ‘It’s just dumb luck.’ Our breasts are sponges, and early detection CAN SAVE YOUR LIFE!  As it has saved mine.  So please, right now, wherever you are – FEEL YOURSELF UP!

Day 28 – Never do bills while drinking homemade sangria, aka ‘No-No Juice.’ So today’s advice – don’t try drinking while on chemo. Man, I can hold my liquor (ok, for the most part) but could barely finish a glass of wine during my second round of chemo. Also, Utz potato chips and French onion dip don’t mix well with chemo either.

Day 27 – Never apologize for cancer, unless you truly think you’re the cause. Before I would have easily said, “I’m sorry,” at the word of diagnosis. Now I make sure I make an effort NOT to apologize. Instead? “Ugh, that stinks, sucks, blows donkey ass, friggin’ ridiculous!” But never, if you can help it, apologize for cancer. It doesn’t deserve condolences. It deserves an ass-kicking!

Day 26 – When losing your hair during chemo, the carpet does indeed end up matching the drapes…..just sayin.

Day 25 – You’ll be amazed at what you’re capable of when you have no other choice. I appreciate when people commend me for what I’ve gone through, I do, and looking back I sometimes am not quite sure how I got through it all. Believe me when I say that I could feel all of the positive love and energy. But there’s a part of (maybe that part that got kicked out of the President’s office in college) that says, ‘what alternative did I have?’ And ‘you would have done it too if you had to.’ I know it’s different for everyone. I mean, there are women who go through treatment WHILE THEY’RE PREGNANT! So, never underestimate what you are capable of. When looking death in the eye and seeing your family standing right next to it, well…it’s not even a choice. We are all capable of great things when there’s no other choice.

Day 24 – When around anyone going through treatment or their loved ones, please be more conscious of hand-washing, staying healthy and keeping clean. Immune systems are weaker in some, more than others, and unfortunately you don’t know just how weak until it’s too late. One sneeze can mean another few days in bed. 102 fever can mean a trip to the ER. One handshake or hug can mean a week in the hospital.

Day 23 – the bills. I’ve had health insurance my entire life. Even as a struggling artist, I had health insurance. My bills over 10 months wiped out everything we had and then some. I got a bill 2 years after a procedure. No wonder people go bankrupt, get divorced or even worse. We’ve got to figure out this insurance thing. No one should ever have to choose between their medication and a meal on the table.

Day 22 – The deepest depression for me hit between the time when I was done with treatment and when I had to wait until I found out if it was all worth it and worked. One month of waiting. Waiting is the worst.

Day 21 – Yep, having cancer is exhausting. Taking care of someone with cancer is exhausting. Worrying about a loved one with cancer is exhausting. Waiting to find results, making a decision, getting consults, continuously filling out paperwork – all exhausting. I hate cliches, but it is truly one day at a time.

Day 20 – Screw Cancer! It’s my husband’s birthday! My best friend, my love, my confidant. Words can’t express…..so I’ll do the dishes.

Day 19 – Protect your skin during radiation. Buy tons of t-shirts that will get ruined as you apply Aquaphor 3-4 times a day. You’ll be less likely to get burnt. Because a burnt armpit? Not fun!

Day 18 – give yourself a break. This time more than any other you get a pass. Screw all of those things that you think make a difference. Right now, all that matters is you.

Day 17 – Try to make your radiation appointments first thing in the morning. That way it doesn’t interrupt your day and gets you in and out of the hospital as fast as possible. I always felt the exhaustion was more from just going to the hospital every day for 30 days, than the radiation itself.

Day 16 – Poop & poop you must! Chemo makes you constipated. The pain relievers make you constipated. They tell you to flush out your system, but how can you? The majority of chemo patients that end up in the ER are there gracias they become septic. Meaning, the chemo drugs are lining their intestines and they can’t poop. Once you know your ‘schedule,’ a day or so before you have a treatment, take a stool softener and eat non-fat foods. If you can eat something with citrus, do. Keep taking the stool softener until you poop, BECAUSE YOU MUST POOP!

Day 15 – EAT! I know, ridiculous. Metal taste in your mouth like you’ve been sucking on an aluminum pan. The stress of foods that you can’t eat reminds you of being pregnant but with no glory. Citrus burns through your tongue. But you must eat. And eat non-fat products so that you can easily digest and poop……yep, poop is tomorrow.

Day 14 – Give your caretake a break. My husband will be the first to tell you that being the caretaker stinks. You have to be a hard ass to the patient in order for her to do what she’s supposed to do. Everyone asks about her and don’t even think to ask how you’re doing. And that whole ‘don’t be quick to judge?’ Well, I’m sure he’s not thinking about the people on the sidewalk when he’s walking to work or bumping into folks on the subway. Yeah, give the caretaker a break.

Day 13 – yes, you have every right to be depressed. But do everything in your power to feel it, acknowledge it, and then snap out of it. Cancer doesn’t care that you’re depressed. Why would you then give it that much power over you?

Day 12 – Know your family history. For the cancer gene, you need to go back to your grandparents’ siblings. If they had cancer, what kind? What age? Remission? If so, when? If they have died, what did they die of? What age? Growing up I always thought there was more cancer on my mom’s side, but after doing the history, it was my dad’s side that was more problematic. I call it my chicken pox family tree. Now I ended up being a true negative, but only because at the time there was one company that held the patent on gene testing for cancer. Luckily two years ago the Supreme Court ruled it unconstitutional, so expect more tests coming out in our near future. They will cost an arm and a leg though. For the BRCA1 and BRCA2, the initial test is $3500, covered mostly by the insurance company. The 2nd and 3rd, neither covered, cost $800 a pop. Luckily I donated my blood to research, so found out without having to pay. Still sucks though.

Day 11 – Stay ahead of the pain.  No point in being a martyr.  I’ll say it here and now.  Pot works.  Like red wine, you don’t need a whole bottle.  A glass is all you need.

Day 10 – Don’t be quick to judge. When you don’t ‘look’ like cancer, people have no idea what you’re dealing with. When do ‘look’ like cancer, you get stares. Could be because they just recently lost someone, care for someone, heard news or is dealing with their own diagnosis. So a reminder, don’t be quick to judge. You never know what someone else is going through.

Day 9 – Give your body a break. Rest and relax when you can. Taking one day off is better than having to take five days off. Listen to your body.

Day 8 – Be as honest and upfront with your kids as much as you can. They are incredibly resilient. Giving them all of the information allows them to take ownership of the situation, and deal with it on their own terms. Plus, it builds your trust with them, something that will be much more beneficial in the future.

Day 7 – Stay out of your head. You can do more damage to yourself. Nothing good has ever come out of worrying or ‘what ifs.’ Easier said than done, I know, but mind over body is an incredible gift.

Day 6 – Don’t be afraid to ask for help. No one should go through any traumatic experience alone. Family, friends and colleagues want to help. Let them. You’ll be amazed at the things they can do – big and little.

Day 5 – Always have your advocate with you. When you hear news from a doctor, whether it’s cancer or anything else, your brain can’t fully download what’s being said. Your advocate is your second set of ears. And Graham, as my advocate, confirmed something for me, something my doctor missed. So again, ALWAYS HAVE YOUR ADVOCATE WITH YOU!

Day 4 – It is your body and your choice.  Arm yourself with all possible information, and YOU make your own choice about your course of action – surgery, treatment, lifestyle.

Day 3 – Don’t be afraid to question your doctor(s)!  You are the product & client, and it’s your life!

Day 2 – Know your body and trust your instincts.  Seriously.

Day 1 – One in eight women will develop breast cancer in her lifetime.  CHECK YOURSELVES!

 

Turning 40, and 3! May 20, 2015

Filed under: cancer — Bad Right Breast @ 8:05 am
Tags: ,

That’s right, I’ve turned 40 years old and three years cancer free. When I was going through all of the bullshit – tests, waiting, doc visits, waiting, scans, waiting, surgery, waiting, chemo, waiting, radiation, waiting, more tests, waiting – for some reason I often thought, “Just let me get to my 40th birthday.” As if turning 40 would somehow miraculously heal me. It seems a lifetime ago, yet it was just a mere three years. The craziest part is that the girls were just three years old themselves when they learned about cancer. Just three. Think of the discussions. The conversations that we had with them, the ones that we never thought we’d ever have to imagine.

  • Mommy has a sickness in her boobs and she needs to get them taken off.
  • Mommy will have new boobs but they won’t be the same.
  • Mommy has cancer and will need to take medicine that will make her sick and then make her better.
  • Mommy will be ok.
  • You won’t be able to hug mommy.
  • You won’t be able to sit on mommy’s lap.
  • Mommy can’t give you a bath.
  • Mommy can’t pick you up.
  • Mommy’s going to lose all of her hair.
  • Grandma will come visit.
  • Granny will come take care of you this week.
  • You’re going to stay the night with Granddaddy.
  • We’re having dinner from so-and-so tonight.
  • Please don’t disturb mommy.
  • Please don’t cough on mommy.
  • Please don’t sneeze on mommy.
  • Wash your hands, please.
  • Use some hand sanitizer, please.

And so much more. I mean, how much can a couple of toddlers take? However, I truly feel that because they were three years young at the time, they were able to handle it as if it were a normal way of life. Very sad to think, but very true. Kids are in fact incredibly resilient. As parents, we are always worrying about how they feel, what they’ll think, how they’ll react to certain news. But then they’ll surprise us at each and every turn.

When we told them that I had CANCER, that I was sick and going to take medicine that made me sicker but then would make me better, they took it with a grain of salt. It was a matter of fact for them. They went right back to eating their chicken wings and broccoli, as if we had just told them something completely ordinary. They later discussed it with their friends. They shared it openly with strangers on the subway. “My mom has CANCER in her boobs and is going to have them cut off.” That simple. When I lost my hair, I was adamant that they be a part of the shearing process. I gelled my loose hair to my scalp to survive an opening night. Wore a baseball cap for an entire day, sealing my hair to my skin, holding it on until I could no longer. That night, I sat on the edge of the tub, and told the girls it was time. And once again, as if it were nothing extraordinary, they gently started pulling my hair out. The freaky thing is they kind of enjoyed it. I had to slow them down as my scalp began to become a bit tender. With the help of my best friends, one with the clipper in hand and the other with a video camera documenting the entire thing, my girls watched as I shaved my head bald. Not completely skinhead bald. More GI Jane bald. And my girls watched every bit of it, even at times using the clippers themselves, again as if it were normal.

Over time, during my treatment, they did in fact need a little of mommy love, that I wasn’t able to give. I couldn’t hug them, hold them, pick them up. And then there were times, in which they got sick, and even though I was warned – really demanded – by my oncologist to stay far away from any and all people who were sick including my kids,… well, how could I as a mother sit and watch one and then both of my children suffer and not hold them in my arms? THAT’s not normal. But then again none of it was actually normal, no matter how easy it seemed the girls took it all in. So I needed to do everything that I could to keep their lives as normal as possible.

My biggest fear throughout all of it, the fear that would make me swell up in tears and still does, was thinking that their first memory ever, their earliest memory, would be of me and my cancer. Fast forward a year and a half. I had been cancer free for more than a year. My hair had grown back. I even had new nipples. The girls were five. We were on vacation, driving, randomly listening to NPR. A female comedian, for some reason I want to say Amy Schumer, was talking about how her first comedy routines were about living through her mother fighting cancer. Out of nowhere, Penelope chimed in, “You know mom? You remember when you went through cancer?” I absentmindedly replied, “yeah?” “Yeah. That was very scary.” I froze. (Thank goodness I wasn’t driving.)  I couldn’t protect her after all. We chatted a little bit about it, but once again went back to normal. For Sophia, it came back but more as a moment in time. Every time we talked about something in the past, to her it was always, “Was that before you had cancer or after?” As if my time with cancer were the zero on the number line and everything else was either a positive or a negative.

Now two years later, I feel we take three steps forward, and then another one or two back. They know of my medicine (daily Tamoxifen). They know I still see doctors on a regular basis. And while Penelope has fears swell up, especially recently with the sudden passing of their school principal, and has expressed the fear, “I don’t want you to get cancer again and die,” on more than one occasion. Sophia has taken it, yet again, as if it were normal. “We’re all going to die. That’s a part of the life cycle,” and she moves on. (Even though they are identical, they are incredibly different.).

So now that I’m 40 & 3, I couldn’t tell you the first thing about what’s normal anymore.  Every time I think we have it figured out, another monkey wrench gets thrown in and knocks it all out of whack.  If I’ve learned anything, it’s that the twins have it right.  They took it all in, and absorbed it.  They processed it when they could, simplified as they needed and then moved on with their lives.  I know ‘moving on’ (in whatever context fits you) is never that simple.  Our own unique situations and circumstances dictate that.  But imagine if it were.  If our minds and hearts could move on so simply.  Instead of over-thinking, creating ‘what ifs,’ and questioning ourselves, we just continued moving on.  Because when it comes down to it, there is no ‘normal.’  What we really want is what’s comfortable, safe and convenient, and when anything deters from that it throws us out of balance.   But no matter how much we strive to be in control, it’s just not possible.  So now at 40, I’ll strive to not over-analyze to create ‘what ifs,’ and I’ll stop pulling out the white strands and just let the grey come in.  I want to process, absorb, and move on.  Then again, what the hell do I know?  I’m only 3.

 

Two years and counting May 17, 2014

Filed under: cancer,in memorium — Bad Right Breast @ 9:01 am

20140601-205844.jpgIt’s only fitting that my birthday and cancer free anniversary are days apart from one another.  A celebration of my birth followed by a celebration of overcoming the possibility of death, back to back reminders of how grateful I am for life.  But it never was put into perspective quite as much as being told you have cancer, then Stage3 cancer, and on the verge of spreading.  If I had waited another year, month or maybe even week, my outcome might have been so incredibly different.  Yet, this year has brought about more questioning, not only about my own life, but about so much more.

It’s been hard, to say the least, to lose someone to cancer, and a bit more surreal if you’ve survived it. Each year brings about another loss. Whether it be someone who has been fighting it for years or someone who discovered it too late. Questions like, why me? What makes my life more worthy than someone else’s? Did they get the same treatment? Did they ask the right questions? Questions that have no answers, yet constantly are asked with every reminder that I’m still here and they aren’t.

Then there’s side effects. My right arm had 24 lymph nodes removed (8 were cancerous), parts of a system that are taken for granted but without them, can throw your entire body and livelihood out of whack. The scar tissue damage from the lymph node removal tightens up over and over again if I go days without stretching and tearing the tissue on a consistent basis. I have to wear a tightly fitted sleeve every time I fly to keep the water retention down. But a flight over 4 hours makes my entire arm down to my fingertips painfully balloon up so much that only being patient for more than 24 hours eases the discomfort (and elephant man effect). Then there’s my boobs. Ahhhh, my boobs. While they do look amazing, the right one (always and forever the right one) hasn’t quite settled into the implant and is much tougher than the left. Luckily one can only tell if you stare at me while naked or try to feel me up. And luckily Graham’s always a bit preoccupied …… that’s another blog ……. so it’s not a problem. Now that it’s summer again, I run into the problem with forever looking ‘cold,’ but again – not really a problem. And I never felt like I was sick or had cancer, so the extent of any other side effect is merely mental.

And boy is it ever mental. Will it come back? Do I really need to go to that check up? Has that mole gotten bigger? Have I always felt this way in my back? Is this headache because of stress or is there a tumor? And then there’s the mental side effects from the Tamoxifen. Luckily, I’ve learned how to cope with those, but it doesn’t make it any easier.

So yes, another year cancer free. I’m grateful. Your life never turns out exactly how you planned. Surprises are always bound to turn up along the way. It’s only how you deal with those surprises that defines who you are. Several years ago I was that same bossy boots brown that overstepped boundaries, took control, and had a hot temper. And in some ways I am still that person. (Just ask my husband) But now I’m learning to care a little less about things that truly don’t matter and care more about people who do. Today is yet another reminder to put my priorities in place. And another day to give thanks, especially when others can’t.

 

 

Saying Farewell… February 28, 2014

Filed under: cancer,in memorium — Bad Right Breast @ 1:27 pm

Screen shot 2014-02-28 at 12.35.40 PM

Sometimes when a person dies, the people that make up her life won’t fully understand her impact until after she’s gone.  But in Amy’s case, each and every individual that met her, instantly knew exactly how special she really was.  I posted the blog on Tuesday for my dear friend Mia Laudato, in honor of her best friend, Amy Furman Ames, a woman I thought was absolutely remarkable, simply through the facebook messages and postings we shared over the course of several months.  I knew that people loved her, but it’s amazing to see the impact in numbers.  Within 24 hours, over 10,000 people read and shared it.   (ps – my highest posting before this was 335).  People around the world are being inspired by her greatness.   Right now, less than 3 days later, that number is now over 16,500, and has reached over 60 countries.  I mean, I don’t even think I ever heard of Liechtenshtein, Oman, or Azerbaijan.  But someone there is now inspired by a woman so great, words can no longer express.  She is literally wrapping her arms around the world in her greatness. Even now, she never ceases to amaze me.

Her family and friends have now laid her to rest, but their time celebrating this wonderful woman hasn’t ceased.  She will forever live on each person she encountered – guaranteed.  Unfortunately, it takes something as horrible as losing such an angel to make us realize what is truly important in life.  Material things no longer matter.  We’ll lose sight of this in months to come, but something will happen that will remind you of Amy, and you will be reminded to put your priorities in place.  We never know how long we are here.  And even worse, things can change with the blink of an eye.  If you were to leave today with just one thing, leave with this.  Live your life as great and tremendous as you possibly can.  Make a difference to each and every person you come in contact with.  As with Amy, a little goes a long way.

If you want to do something more, Amy’s brother Scott posted this in the online facebook group:

“Many have asked about organizations that they could donate to in memory of my sister. Amy had many causes that were close to her heart – way too many to list. Please don’t feel restricted by this suggested group below:

Breast Cancer Research Foundation
https://donations.bcrfcure.org/donate-now

Gina McReynolds Foundation
http://www.teamgina.org/donate-now

Buoniconti Fund
http://www.thebuonicontifund.com/page.aspx?pid=511

Notices of donations can be sent to Amy’s mother:

Yvette Katz
256 Sayre Drive
Princeton, NJ 08540

Some have also also asked if there is anything they can do to assist her son, Jacob. I have set up a 529 education savings plan that anyone can make contributions to. If that interests you, please send me a private message or email containing your full name and email address. (It may take me a few days to respond to these, but I promise to get back to everybody.)”

To Amy:  Goodbye, hot mama.  I’ll see you in tonight’s sunset, tomorrow’s sunrise and in the kindness of a stranger.

 

Amy and her Army February 25, 2014

Filed under: cancer,in memorium — Bad Right Breast @ 10:39 pm

I only just read the news less than an hour ago, and immediately began to cry.  Instantly aware, my twins ask simultaneously, “Why are you crying?” I couldn’t form the words.  How do you explain to a couple of five year olds that you’re crying for someone you’ve never met, and really barely even knew.  “A friend of a friend passed away this afternoon,” is all I could muster.

I admit I never would have known who she was.  One of my high school summer stock friends, whom I truly love with all my heart – Mia Laudato, reached out to me less than a year ago.  It starts for me there.  One of her best friends, Amy Furman Ames, has just been diagnosed with, you’ve guessed it, breast cancer.  She’s weeks away from turning 40, has a dear son just entering double digits, and she is beyond beautiful gorgeous with an amazing smile that never wears away.  Amy and I message each other over the course of several months.  She reads my blogs, I tell her stories about constipation problems.  You know, the normal cancer talk.  She makes my Mia smile, so I know she’s a special person.  We keep in touch through the summer, but the fall and now winter season isn’t so kind to her.

I’ve said it many times before.  Cancer knows no prejudice.  And EVERY PERSON’s experience with cancer is different.  It’s make-up, diagnosis, treatment, reaction to treatment and recovery.  I know this.  I say it all the time.  Based on the sheer fact that all of our genetic make-up is unique, our cancer is unique.  My story isn’t your mom’s story, your brothers, or even yours.  And it for damn sure isn’t Amy’s.  Amy’s story is truly beyond unbelievable, just as unbelievable as the woman and life she embodies.

The best thing Mia could have done for her best friend is create a private group ‘Amy’s Army’ for each person who has been touched in someway by this incredible creature to help her and her family fight through this.  And boy did she ever fight.  Ready?  Here’s her whirlwind told along the way by her brother:  diagnosed with breast cancer less than a year ago.  After numerous consultations &  chemo treatments, she has a mastectomy in early November with no cancer found in the lymph nodes. Less than a month later while still recovering from the surgery, Amy has a series of seizures, in which they discover she has brain cancer.  Days later, a second surgery removes the brain tumor.  Recovery is slow but steady, and she fights every step of the way.  Weeks later, she suffers from headaches and told that the area where the brain tumor was removed is now inflamed and possibly infected.  But when they go in for a 3rd surgery (in which they were prepared to permanently remove a piece of her skull), they find a 2nd larger tumor has now grown in the site of the first.  Stereotactic (focused) radiation treatment, the only type of treatment, is moved up.  She suffers temporary paralysis on one side, continued seizures, feeding tube inserted.  Starts to recover once again, moving back and forth from the ICU to hospice to a step-down facility, back to hospice.  Seems so simple putting it down into words, but this goes on all over the course of several months.

But at the same time, each and every person that visits this astounding being while in the hospital, says the same exact thing – she’s upbeat, happy, smiling, full of life, making jokes, so positive.  Two weeks ago, she is having visitors try on her fabulous wigs.  Never would you have thought that this was a woman fighting for her life.  A woman whose story told over and over again reads the same by each person who encounters her.  She is the epitome of beauty, inside and out.

Another factor I mention about cancer, is that EVERYONE knows cancer.  Either a family member, loved one, friend, child, sibling, or even yourself has gone through cancer.  When I’d take the subway and ‘look’ like cancer (you know, that bald, sickly look, with no eyebrows, the no eyebrows really did it), I’d get stares.  And soon realizing, that because I ‘looked’ like cancer, I reminded people of their cancer.  I say this for Amy’s caretakers.  Her mother, brother, family, friends, neighbors, co-workers, and countless more.  Amy’s story is now their story.

Amy passed away this afternoon, very peacefully and in no pain, with her family by her side.  Their lives will never be the same.  And yes, FUCK cancer for taking an irreplaceable person from them.  If any of them could have taken her pain away, I know they would have without hesitation.  Just as my Penelope climbs in my lap, wipes away my tears, and says, ‘I’m sorry your friend of a friend died.  That really stinks.’  Yes, sweetie.  It certainly does.

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ON TAMOXIFEN – and forced into Pre-Menopause February 21, 2014

Filed under: cancer,Tamoxifen — Bad Right Breast @ 6:46 am

It’s been the longest time since I’ve written, which can be blamed on a number of reasons – family responsibilities, day-to-day chores, long work hours, twins entering Kindergarten, volunteering duties, football season, the holidays and my never-ending TV addiction.  In truth, it’s been hard to think about writing.  Not because of the exhausting list above (although partly to blame).  The past 9 months have been the hardest for me, mentally.  Let’s rewind.

April 17, 2012 marked my last day of radiation, and the unofficial end of my cancer treatment.  I sank into the deepest depression, and thanks to my best friend (a psychotherapist) helped me identify what was happening.  For the previous 10 months I had been treating, aggressively I’ll admit, my Stage 3b Breast Cancer (double mastectomy, 4.5 months of chemotherapy, and 30 radiation treatments).  Once I wasn’t actively treating it, I went back to the waiting game to see if all of that energy spent was actually worth it.   The waiting game is something I talk about often.  Those long days and nights, sometimes weeks, and for even some months, in which you’re not given any answers to questions you sometimes don’t even know to ask.  That anxiety that eats away at every minute of your day.  Yeah, that’s the worry game, and one which you can either ignore, which is easier said than done, or let eat away at your inner self.

Since my cancer was estrogen receptive, meaning that it most likely progressed at such a fast pace due to the high estrogen levels in my system (yet, another mark of being a woman), I was put on the drug Tamoxifen.  The drug is an estrogen blocker, thus lowering the levels of estrogen in my system.  The plan was to be on the drug for five years, the normal plan for most women whose cancer is estrogen receptive.  On May 30th, my 37th birthday, my oncologist scheduled for me to have a Pet-Scan taken, at my request and her suggestion, in order to ensure that all of the treatment worked and that I was in fact ‘cancer-free,’ those words I longed to hear ever since I felt that lump nearly a year prior.  (Side Note:  last week, nearly 2 years later, I found out that the Pet-Scan was not at the approval of my insurance company, thus the beginning of my appeal to have them cover the $3700 soon-to-be delivered bill.)

I started at that time to see my list of doctors every 3 months – medical oncologist, radiation oncologist, breast surgeon (even though I now have fake ones, she’s still necessary), and the reconstruction surgeon (still had to finish getting nipples and areolas, see BLOG for more info!).  Each time upon visiting my medical oncologist (the one responsible for the chemotherapy treatment), I would be asked the same questions about possible physical side effects from the Tamoxifen:

  • Are you having your periods?    Yes
  • How often?  Usually every other month or so
  • Any leg cramps or clots?             No
  • Any hot flashes?                            No

You see, the estrogen blocker is meant to reduce the estrogen in my system, and basically throw me into pre-menopause.  However, since I wasn’t having any of the physical side effects, my oncologist assumed that my estrogen levels were still at a somewhat normal level.  She recommended that I take an additional estrogen blocker, a treatment actively being pursued in the UK, by coming to the hospital once a month for an injection, for the NEXT FIVE YEARS!  I said no immediately, and knew without hesitation that I would not be able to mentally handle that concept.  It was tough enough to get to the hospital every 3 weeks for chemo, then 5 days a week for 6 weeks for radiation, and now every 3 months to see her.  The memories, the anxiety, the waiting – it all wears on my soul, and I knew adding 12 times a year for 5 years to that would become physically painful.  So instead, we agree that I may have to stay on Tamoxifen for 10 years, instead of just 5, since I’m so young and I’ll still have estrogen in my system for years to come.

So for the next year, I continued to live my new normal life.  My hair grew back, with the chemo-curl proven myth to be true.  After finishing all of my reconstruction, my tatas looked better than ever, with almost all scarring wearing away.  My right arm goes through its ups and downs, from having the rare stinging numbness return (which I’ve come to identify as phantom nodes), to carpal tunnel getting so exasperated in my wrist I’ve turned to acupuncture (which does help), to wearing a sleeve when flying so that it doesn’t retain water and swell up (quite painful and takes 24 hours to return to normal).  I was starting to get used to it all.

Then in June of 2013, I celebrated being one year cancer-free.  At a time when I should have been overwhelmed with happiness and excitement, something else started to happen.   I started to have mood swings, sprinkled with fits of rage.  I couldn’t focus.  Multi-tasking became quite challenging, which for me is usually a walk in the park.  And something else was going on, something that I can only describe as being disconnected.  I had been on Tamoxifen for more than a year.  At my August check-up, I’m asked the same physical side effects questions, and my answers were always the same.  But this time, I decide to throw out there these ‘things’ that I’m feeling, or not feeling, in just casual conversation, and how it’s starting to affect both my personal and work life.  The Dr. says (not her exact words), ‘Yes, these are the depression side effects.  Most women under the age of 45 choose to go off of the drug around this time, because of these feelings.’  WHAT!  Was exactly my immediate reaction.  All this time, I thought I was going insane, stuck in my head, something that I worked to stay out of throughout all of my treatment the year prior, and now I’m being told that this drug will keep me there for another NINE YEARS!

The oncologist continues talking.  She says that she can recommend a psychiatrist who could prescribe an anti-depressant for me.  I’m thinking exactly what you’re thinking.  You want me to compound a drug in my system with another drug.  Is adding fuel to the fire really the answer?  Within minutes of finding out that none of this is a result of my own doing, that these ‘things’ I’ve been feeling and going through were not because of me but were because of Tamoxifen, I instantly felt a weight lifted.  I wasn’t going insane.  I refused the shrink suggestion, and promised that if it got to a point in which I needed help, I would rather go to group counseling at Gilda’s Club, and talk with other people going through the same issues instead of a single doctor who would most likely not have any idea of what I was actually dealing with.

I walked out of there and felt like nearly a new person.  All of that mixed chaos, feeling disconnected, the medical field lumped into one category, and labeled it as ‘depression.’   I was immediately able to identify what was going on whenever it happened and then able to take a step back and continue forward.  There are times in which Graham pushes me to simply cry it out, because we all know how much a good cry helps. The fits of rage and mood swings are much less now.  I’m not sure if my body has adjusted to the Tamoxifen or if I’m able to subconsciously ignore it. I have been focusing much more on the positive in my life – my husband, my twins, my family, my friends.  My girls are on an excellent school.  My husband is finally getting the credit that he deserves.  We live in an amazing city.  I have a tremendous job.  And most of all, I have my health.  Even at the worst of time in being diagnosed and then treatment, I’d remind myself that there’s always someone out there that has it much worse.  And in truth there is, and unfortunately there not that far away.

That’s right.  Life is in fact good.

 

On air with NPR’s Brian Lehrer January 22, 2014

Filed under: cancer — Bad Right Breast @ 1:45 pm

A great listen this morning on NPR’s NY station, WNYC with Brian Lehrer.  I’m on at 14:26.

Enjoy!

http://www.wnyc.org/story/open-phones-should-we-blog-our-illness/